Tag: mastectomy

I had a completely different blog post set to go today… and in line with the theme of my life (and the original post), sometimes things don’t go as planned. Sometimes life takes a 180. Sometimes it’s good, sometimes it’s bad. Today, it’s good.

The results of the Oncotype DX test came in today: LUCKY 7. A great sign that I’ll likely just need hormone therapy, and not chemotherapy. All of my limbs are crossed for good luck. I see the first oncologist on Monday and will know more once I have expert opinions.

The last week and a half has been tough, and when things get tough, you start to weaken. Hence, the original post below, written before the universe decided to throw me a bone. The original post will have you wanting to slit your wrists… I know how you all love a good cry, so I kept it, because it’s necessary. Grab a glass of something and read it with a smile, and a sob, and a few more smiles.

This post is dedicated to my Duanester. He’s already seen this post. He said it was good.

Duane has made me (and some others) want to punch him in the face many times in the last year. I’m sure he’s wanted to do the same to me. I’m sure a lot of times I deserved it. But we’ve also shared so much love, memories and ridiculous inside jokes for the last five years, and I know the universe put us together for a reason. There are no coincidences in this life.

This is Duane and my all time favorite song. We were both shocked to learn that when we first met #LoveAtFirstSight. I always thought, this would be a very weird wedding song. I didn’t realize I wouldn’t need it for a wedding. I’d need it for this memoir. It makes perfect sense.

Love you my Duanester. You were tough to put up with someone like me. Always keep it in the middle ❤

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ORIGINAL POST: “the struggle is real”

Anxiety is a motherfucker. I’ve felt it inside my chest, and inside my head, steadily since June 1.

It’s crazy the power of the mind and its ability to physically take over. It’s actually impressive how strong a hold anxiety can have… how it can leave you paralyzed and absolutely terrified.

I’ve always suffered from work-related anxiety — my mind races, I get nervous about a big presentation, I anticipate next day challenges, I know I have to wake up extra early and don’t want to be late, so I barely sleep at all… it’s all pretty standard, for anyone.

At the same time I was battling doctors to figure out what was really wrong with me, my entire world literally flipped upside down and fell all over the floor. Now, post-mastectomy, I’m dealing with the fall out of ALL of it. It’s this bigger picture of my life right now that prompted me to start blogging in the first place.

In June, I wasn’t just diagnosed with DCIS unexpectedly. After months of discussion and effort, my boyfriend of five years, a man I love dearly and planned to marry, Duane, also moved out of the house we shared and we ended our relationship.

YUP. You just read that. Full disclosure, he’s already read this post and fully supports it.

I will not share personal and private details about my relationship with Duane and why we decided to part ways. The moral of that story is simple: sometimes (often times) love just isn’t enough. Sometimes things don’t work out the way you planned. But at the same time, love is powerful… and powerful love gives equally powerful anxiety a run for its money.

So to be clear, this post is not about what pieces of shit men are or how Duane is the root cause of all of my anxiety. It’s about what people who love you do to support you when you’re faced with the shittiest possible circumstances. It’s about how people show up when shit gets real — your best friends, your family, strangers and even your now ex boyfriend. It’s about accepting life as it comes, even as torrential as mine has been, and moving past the life you planned to allow room for the life that needs to emerge.

It’s next to impossible to process with any kind of sanity a major break-up that happens at nearly the exact same time your second cancer diagnosis is handed down. I had no idea how to tell anyone I had breast cancer after all these years of being in remission. I was embarrassed to tell people Duane and I were breaking up, when the first question people would ask was, “How’s Duane handling this cancer nonsense.” I didn’t want to say the words. I didn’t want to tell this story a thousand times. I didn’t want to look people in the eyes and watch them crumble. And I didn’t want people gossiping and assuming things behind my back. So in all honesty, I can count on one hand how many people knew what was going on with my health and with Duane.

I’m grateful that despite many difficult relationship conversations, Duane was with me every second through finding out I needed to have a biopsy, while I was on a business trip all alone in Las Vegas and far away from any source of comfort (I did end up spending the afternoon at this spa, it was necessary). I’m grateful he insisted on driving me to have the biopsy on May 1, even though plans were in place for him to move out and I was trying to shut him out. I’m eternally grateful he persistently checked up on me after every doctor appointment, particularly my June 1 appointment that I expected would be very standard and turned out to be everything but standard.

I’ll never forget that day… June 1 was the day anxiety kicked break-up sadness aside and grabbed a hold of me hard. All of a sudden, I didn’t have any time to be sad about my break-up. I simply needed every best friend I had, Duane being front and center. Just because you break up doesn’t mean you don’t show up.

My mother and I numbly walked out of Dr. B’s office into a gloomy, drizzly, grey parking lot (how appropriate). We sat in the car for a few minutes to figure out, what now?? Do I go home with her and face my poor dad? No way. Is she actually going to let her daughter drive two hours home alone to Beacon, to a house once filled with love and now filled with petty arguments? Apparently yes… she didn’t really have a choice, although she did try to convince me to let her come. I needed to be alone. I needed a good drive. I needed the old comfort of MY home. I needed to cry ugly and loudly by myself, while listening to the saddest playlist ever. It’s a girl thing. I did talk to my best friends Jackie and Colleen from the car on the way home. We all cried together.

I got home, climbed onto the couch with my pillow and my old teddy bear Doc (my first teddy bear, a gift from when I had cancer the first time… yes, I’m in my 30s) and waited for Duane to walk in the door. And when he did, and looked at me in my swollen red eyes, and looked at the paper Dr. B had drawn on to describe my diagnosis and recommended surgery, he didn’t quite understand. And then I had to say it, “I have breast cancer,” and he fell apart with me, and grabbed a hold of me tight, like a best friend does.

And after a little while, we did another thing that best friends do… we ordered the fattest meal possible from our favorite local diner and sat in front of the TV watching DVR in pajamas for the rest of the night.

In the days that followed, June and the first half of July, I was truly manic. I’d had my cry and now had to kick into planning and execution mode. Time to get to work, bitch.

I made lists of the things I needed to do in June and July: tell my boss/coworkers; research and meet with plastic surgeons; decide on which very complicated reconstruction surgery to have and prepare myself for months of physical therapy, recovery and perhaps a lifetime of not really feeling like myself again (holy shit); divide up the items Duane and I owned and clean the house that was now missing all of his things; get a handle on the finances and bills that Duane always managed for both of us; and importantly, reach a huge milestone in the skincare business I own: become a level 5 leader, a personal goal to make sure one good thing happened in June.

I insisted on preserving what was supposed to be the “Summer of Mary,” going to Maine with my family and visiting my brother and his family in LA… who knows when I’ll get to pick those babies up again. Really, I was adamant that the shit hitting the fan would not stop me from living life my way. And it didn’t… I just lived with a permanent tightness in my chest day and night, like I was carrying an elephant around all day long.

I couldn’t sleep in a house that all of a sudden sounded and smelled differently now that Duane was gone, so I either stayed up until the early morning hours starting projects and checking off lists, or I medicated myself to sleep. Regardless, I’d wake up with a start, early in the morning. My feet would hit the floor and I would go, fueled by anxiety, adrenaline and a feeling that time to get everything done was running out. I luckily had enough vacation days at work and was able to take the entire month of July off. I was a waste of space there in this state of mind anyway.

I slowly started to tell my closest friends and family, and they flocked to me. They helped me clean and organize my house. They helped me feel normal, brought me wine, took me out, DISTRACTED me. They helped Duane wrap his head around this insane situation and offered him advice on what to do next. They planned an incredible party for me in NYC, HOLLApalooza 2015, to celebrate life and friendship and new beginnings. They bought me things they knew I’d need, that I hadn’t even thought of. They helped me start this blog. I’ll be forever in their debt. I have the best people in the world in my corner. I don’t think many people can say that and really mean it. A future post will be dedicated to my kick-ass posse.

This feeling of friendship and love only escalated and overpowered anxiety when I launched this blog. The response I’ve gotten has been ENORMOUS. Tougher Than TWOmurs has reached people I’ve never met, or that I’d lost touch with, and has fueled such incredible positive energy, which prepared me for the hardest part, my surgery. I’m convinced the only reason I left the hospital as soon as I did is because of the constant flow of well-wishes, text messages, Facebook messages, phone calls, that came in droves, distracting me from how shitty I felt and replacing the pit in my stomach with warmth in my heart. I’ll be forever grateful. It meant more than anyone could have ever known, and now you do. Duane showing up at the hospital and staying for two nights sealed the deal.

It’s been exactly three weeks since I had my double mastectomy. Recovery-wise, my first week went so much better than I ever expected it would, but that doesn’t mean it’s been a walk in the park. The first few days and nights out of the hospital were tough. Thank God I had a crew helping me around the clock.

Showering, getting dressed and doing my hair are interesting experiences. Daily functions get a little easier everyday, but each new day brings a new complication in the recovery process… my chest muscles are spasming, nerves are angrily coming back to life and the pain and discomfort just take on new forms that I have to get used to all over again. It feels like I have two bricks sitting on my chest and lumps under each arm that create constant tension in my torso. Nights are filled with interrupted sleep (you just cannot get comfortable) and medication doesn’t really work. I cannot do basic things like open doors, pour myself water or sit up after laying down. The healing process is annoying as hell — I want to be better now, and instead I’m extremely stiff, can’t move my arms much, am forced to sleep on my back and am tired all the time.

I’m an independent woman living in her retired parents’ home again, and reliant, day in and out, on two people I haven’t lived with for over a decade. As incredible as my parents have been, and even though their home has been flooded with the kindest of well-wishes, flowers, desserts, cards, calls, friends, family, laughter and love, there is a hole… I long to be in my own home, with my best friend Duane, who knows exactly what to do, what I need and how to make me feel better, and it’s just not going to happen, nor should it happen. My life as I knew it, and loved it, is once again forever changed, and it sucks. That’s all there is to it.

That sadness I thought was kicked to the curb has now teamed up with anxiety and come back with a vengeance. It didn’t help to learn after week 1 that my journey with cancer is far from over. What. The. Fuck.

Duane was the first person I called.

In this circular pattern my life tends to take, I had my day on Aug. 13th to cry and pity myself, and then I got to work. How am I going to plan each and every day from now through September, which doctors will I see, will they even SEE ME (let the hounding commence), if I need chemo, will I be able to travel or attend my best friends’ weddings in the fall, when am I going to harvest my eggs… I HAVE TO HARVEST MY EGGS?? I don’t even have a husband in my future anymore, when the hell am I going to use these eggs I have to pay thousands of dollars to harvest? What will the side effects of the hormone therapy be, am I going to turn into a man?

When the hell will I ever get HOME and back to some normality…

This tough bitch isn’t feeling so tough these days. I guess even superwoman needs a vacation every now and then.

I had no idea how to end this post on a more positive note. These last few weeks have left me pretty hopeless. So I asked Duane… and that’s what the silver lining really is. We may have lost the fairy tale, but we got to keep the friendship.

In this life, we ALWAYS have a choice. Wallow in the sadness, or accept what is and find the good in it. Have faith that once the air is cleared, the mind will be too.

And then find a hundred online memes that inspire you to just keep on truckin…

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I feel like I’ve heard this phrase, or a version of it, way too much in my life… “I’m so sorry, Ms. Lewis…” “I hate to be the one to tell you this, Ms. Lewis…” “I have some not so great news, Ms. Lewis…”

Life is so full of ebbs and flows. Mine is full of skyrockets and nose dives. This completely bipolar life of mine.

I’m writing this on August 13th, one week post-surgery, the same day I posted my last HI-larious tale about the things you really should know before having a double mastectomy. As I was putting the finishing touches on that last post, I was headed to see my breast surgeon, Dr. B, for my first out of the hospital follow-up visit. Based on how my visit with the plastic surgeon went earlier in the week, I expected to go in and out… I’d have one drain removed and planned to ask for gene testing, something that was offered to me back in June. My doctor and I agree that this isn’t about gene testing for the BRCA mutation, the notorious breast cancer gene. We’re both quite confident my breast cancer has nothing to do with BRCA. The truth is, nobody knows why I had Hodgkin’s Disease when I was 16, and I’m hoping if I get the gene testing, cancer research one day will be advanced enough that I’ll have some answers. If not for myself, then for my family, my siblings, my future children. I’m actually confident this is true. I’ll never stop searching for answers.

But that’s not exactly how my August 13th visit went.

Dr. B took me right in, she checked out my new boobs, she took one drain out, and then she asked me to dress and come to her office… that’s the sign, people. If ever you need to be prepared, when a doctor says, “Let’s talk in my office,” it’s usually not good news.

Dr. B didn’t bother to hesitate: “I hate that I’m always the bearer of bad news.” And my poor, unbelievable mother… her breathing. Trying so hard to be strong for me. Wanting this to be her, and not me.

It turns out the pathology of my breast tissue from the mastectomy showed that, even though all of my breast tissue is now gone, the cancer that was in it was in fact invasive. DCIS, which was my initial diagnosis based on my biopsy, is typically contained in the duct. There was a chance, and I was warned that this was low, that some microscopic cells could have floated outside of the duct… in translation, invading the tissue. Well, that low chance happened. Of course it did.

My doctors are doing additional tests, an Oncotype DX test to be specific, to determine the potential risk of my estrogen-receptor-positive breast cancer coming back (recurrence). This will also give the doctors and I a sense of which treatment I’ll benefit from… hormone therapy, or hormone therapy plus chemotherapy. You can read all about how that test works and what it might tell me by clicking the hyperlink above.

And yes, you read that right… I may need chemo again.

If you ask me, I’m SURE I’ll need chemo again. That’s just how my life works. This link is giving me some hope, given the small size of my tumor (roughly 9 millimeters). Also, a sentinel node biopsy during my mastectomy came back fine, a good sign. No lymph nodes were removed during my mastectomy. I’m still preparing for the worst, because I have to.

As I learn more about this Oncotype DX test, I have to laugh, because there is a scoring mechanism that helps determine risk. Basically, if you score 18 or lower, you just need hormone therapy. Anything higher than 18 means chemo should be considered. The number 18 has been a significant number throughout my life. It’s my lucky number, it’s a number that pops up in so many things that I do… no doubt a sign from the universe… I’m going off on a tangent, but I never fail to see the irony.

There are no coincidences in this life. You gotta watch for the signs… life is so weird like that.

The results of the Oncotype DX test won’t come back for a couple of weeks. In the meantime, I’ll be searching for the best oncologist and making additional plans that I was not prepared to have to make. I’m sure I’ll also be on the phone with my insurance carrier to argue with them about covering the cost of this test, which is several thousand dollars. This crazy circular life of mine… I’m in a constant state of deja vu, and not in the awesomeness that is Beyonce way (I couldn’t end my day without praising the queen… “don’t worry, be yonce”).

I’m encouraged that my breast cancer seems to be very treatable and survivable. Research shows a 5-year survival rate of roughly 98%, which is higher than what my Hodgkin’s was back in 1998 (I recall at the time, survival was 80%). This is GREAT news. I should be thrilled. Today, I’m just not. I’m fucking pissed.

Livid does nothing to describe my mood right now. But earlier I was just sad. I’m still so sad. I’m sad I have to deal with this nonsense, again. I’m crushed my mother has to watch me deal with this nonsense again. Her baby, her only daughter that she tried one last time to have and kept a secret for months from everyone, even my dad. My mother who told me on June 1 that she knew the day would come where the doctor would tell me, you have breast cancer. And she kept that to herself too, for 17 years, to spare my heartache and sanity, and told me how relieved she was that the day had finally come where we could just deal with it and move on, never worry about cancer again.

She carried it, and made sure I never had to.

And now that I have to, she’s broken for her equally broken daughter. What the fuck would I do without this remarkable woman? I always have to go back to how unbelievably blessed I am to have her here, making brilliant decisions and teaching me to do the same. She’s my rock. She’s the reason I came into the world and why I’m still alive today. There are no coincidences in this life.

Tonight was the first time breast cancer ever made me feel empty. I knew I had to have a mastectomy, but I never felt sick. I wrote about how terrified I was to wake up feeling this emptiness, this concavity. I was relieved that I woke up from surgery to a whole lot of pain and pressure in my chest, because pain you feel. I’m wondering if that’s the reason I’ve recovered so quickly, pain feels real to me. Tonight, as I type this through my speedy recovery from surgery, there’s really not much physical pain left at all… I’ve mostly weaned off of narcotic pain killers, a huge feat in such a short time-frame. There’s just numbness, and weird sensations in the skin covering my expanders and in the nipples I so desperately wanted to save. It doesn’t feel good at all. It makes me want to jump out of my skin. All I want to do is fall asleep lying on my side, snuggled up to my little baby boy Sullivan. He’s been with me all night.

I didn’t tell many people today (Aug. 13th), but I hand-picked the few who I’ve worked with in the past that can help me find the best oncologist and treatment, for me. I knew all of these years working in pharmaceuticals would one day come back to repay me. I have a team of badass bitches like myself already making moves and have names of 5 star doctors in my area. And you know why? Because as Tiny Fey would say, “Bitches get stuff done.” And the only thing I can do right now is use all of my fucking anger to absolutely demolish cancer. Dude, I am so much tougher than you.

I went for a walk down by the beach tonight with my best friend Laura. When I got out of the car, a man on the boardwalk said, “You just missed it. It’s gone.” He was referring to the sunset.

He was wrong. There was still so much color left in that sky.

“The Bluff” Kings Park, NY Aug. 13, 2015

And there’s still so much more fight left in me. I have to laugh that cancer actually thinks for one second I’m not going to ruin its life before it ruins mine.

Bring it the fuck on, cancer. You must have forgotten that I’ve done this before. I will OWN YOU.

You think you’re gonna stop me from living the life I’ve worked hard for and deserve? I’m off to the Hamptons with my best friends Cathy and Lacey to prove your stupid ass wrong.

Cancer, have yourself a nice little weekend. You best get ready for Monday, because shit’s going down.

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There’s so much you plan for. So much you expect to happen and brace yourself for.

Then there are the things that happen which totally throw you for a loop, but really shouldn’t, because I’m pretty sure they happen to everyone who has a double mastectomy. For some reason, nobody talks about them.

I’ve been good about keeping my peeps informed with little updates day-to-day on social media. It’s clear I’m continuing to recover swiftly. My mind is set on it. I’m doing the things I want to do and being very careful not to do the things I still can’t… but every day gets better. You GOTTA keep moving. A body in motion stays in motion.

But social media can so awesomely distort reality if you’re clever, and we all know too many people take advantage of that.

I’m not about distorting anything. I’m about being real and throwin’ down some truth.

So here you go… get ready to laugh, and get ready to be informed. Here are the top things I learned over the last week that everyone preparing for a double mastectomy, or perhaps another major surgery on the upper body, needs to know (you’re welcome). I’ll start with the really good stuff first.

Drains
To be clear, everyone having a double mastectomy is prepared in advance that they will go home with drains. The type of procedure you’re having will dictate how many drains you get. Your physician should instruct you on how to care for the drains at home. You have to empty the fluid that the drains produce (blood and other nasty shit) and measure that fluid a few times a day. Once the output in a single drain is less than 30 CCs in a 24-hour span, the drain can come out. I left the hospital with four drains, two on either side of my torso. On Tuesday my plastic surgeon was able to take one drain out. Today I had another taken out. THANK F*CKING GOD. Drains are disgusting. The only people who disagree are nurses and family/friends who are lying because they don’t want to hurt my feelings. Sorry, it’s true… you be the judge.

(And an added bonus is that I cannot figure out how to adjust the static, ridiculous look on my face before you start this video. God and WordPress have the best senses of humor.)

On the real, you get used to the drains. They are very annoying, but probably wouldn’t be if you had full range of motion, which you won’t directly after surgery (keep moving). I have one drain underneath my right expander and it’s dancing on a nerve… certain moves make it feel like a hot poker is sticking me in the ribs. It’s excruciating, but there’s nothing I can do about it and luckily that doesn’t always happen. Your doctor will explain how to shower with them. They can get completely wet and my plastic surgeon gave me a belt to wear around my waist during the day/night with pouches for them, which was so helpful.

too sexy for these drains

The drains are bulky, you see them underneath your clothes, so wear blousey stuff or if you’re fancy, shirts with ruffling on the bottom.

NEXT TOPIC…

Here’s the thing… your doctors will tell you pain medication is binding. They might even tell you to start taking a stool softener a full week prior to surgery, which mine did (and I obliged). What they don’t necessarily tell you is that anesthesia puts your intestinal tract to sleep… FOR DAYS. I had 7 hours of anesthesia, which was 2-3 more hours than everyone originally estimated. Some mastectomies can take upwards of 12 or more hours (DIEP flap, latissimus dorsi flap). A small silver lining is, before surgery, your stomach is empty, and after surgery, you aren’t exactly shoveling food down your throat… that gives you SOME time for the anesthesia to leave your body, but that many hours can take a week or more. One particular nurse on Friday night asked me every hour if I’d “moved my bowels” and I nearly clocked her (Duane was ready to ask if she wanted to see his). Don’t talk to me about pooping when I’m still trying to learn how to PEE (it’s tough figuring out how to pee again, you really have to think about it).

So the whole “I can’t poop” thing got really old by Saturday night, which is when I started pulling out the big guns: extra stool softeners, prune juice, Miralax, all kinds of non-binding and fiberous foods (figs, fruit, veggies), COLONOSCOPY PREP, tons of water… none of it worked. No shit. I looked like I was 5 months pregnant and legit had more people than I’m proud to admit helping me and asking for updates (nothing is sacred, they were all genuinely routing for me). I eventually did something I can’t even bring myself to type, and it was like Moses parting the Red Sea.

I’d avoided my Percocet that day, so celebrated with wine. I earned that shit. It’s like when you have an infant and you pray for a poop.

If you think this is TMI, I hate to be the one to tell you, you’re the minority. The poop emoji isn’t one of the most popular for nothing. Welcome to 2015 where everybody poops (unless they just had a double mastectomy).

eating shit in a fabulous tank top on Aug. 13, 2015

PILLOWS

THESE ARE SO IMPORTANT. Women will appreciate this, men will hate reading this truth. There’s a reason why women have thousands of pillows on their beds and around the house… it’s because one day, they might have a double mastectomy, or someone they know will, and women help other women by giving them all of their soft throw pillows. I took this picture when I slept at my best friend Melissa’s house in early July so that I could use it one day to tease her… she is the queen of too many pillows (they’re all fabulous). I’ll never tease her again. #TurnDownForWhat

my friend Melissa loves throw pillows…

Post-surgery, it’s incredibly difficult to move. You feel pain across your chest and down your arms. You need pillows to prop you up from behind. You need smaller pillows to put underneath your arms while laying in bed or in a chair (you want your arms elevated, level with or slightly higher than your body). Even better, put a pillow under your knees (my best friend Colleen taught me that). On your way home from the hospital, you’ll NEED a pillow across your chest so the seat belt doesn’t smash your sore body, and smaller pillows by your sides so your elbows sit higher. Soft and smushy.

The hospital let me take as many of their smaller pillows as I wanted (ask them when you’re leaving). I’m still using them at home. They sent me home with this heart pillow too, made by local women, which I love.

outta jail on Aug. 8, 2015!

Prepare Your Hair

I’m the animal in this picture… when you’re having a surgery that disables you from being able to lift your arms to wash your hair, brush it or put it up, you must prepare. Millions of people are going to want to visit you, they stop by unexpectedly, and you won’t want to look like Phil Spector. Trust me.

If it’s not clear already, you can’t lift your arms after having a double mastectomy. Putting a shirt over your head is next to impossible. The hospital may put you in a disposable surgical bra, they may not. Regardless, you will need zip-front or button down clothing so you don’t have to worry about putting things over your head. Even if you have help, getting your arms through something that goes over your head is excruciating. I have a ton of sports bras that I brought with me… I was only able to use two because they were stretchy, spandex material (gotta be able to stretch over your shoulders, cotton will be too tight). There were still a few moments where tears (sobs) were shed putting clothes on overhead. If your doctor doesn’t give you a good bra, or if you just want more than one, most sporting goods stores carry zip-front sports bras. Try Sport’s Authority, Dicks or online at Target and Amazon. You’ll likely need a much larger size than you are used to because you’ll be swollen.

Don’t wear pants that are in any way tight around the waist or need even the slightest tugging to pull on and off. After surgery, you cannot push anything, pull anything, carry anything or use your arms to push yourself up out of bed. No opening doors, no leaning on someone to get up, no reaching for things up too high. Everything has to be done using your legs and your core (I can’t wait to weigh myself when all of this is done). When I ditched my hospital gown, I’d luckily brought with me this ridiculous zip-up shirt that I wore in college to attract boys (sans the bulky drains, it looked hot once… if this shirt could talk). The nurses and doctors loved it. I knew there was a reason I save everything I once owned, forever.

rockin’ drains like a champ in the hospital on Aug. 7, 2015 #LaterHospitalGown

But the pants I brought, normal stretch cotton gym pants, were difficult to pull down and back up to pee, again, something so simple becoming so complicated. You also feel like a jerk asking for help in the bathroom each time. The nurses are of course there to help, but once you’re up and becoming a more self-sufficient, they aren’t running in to help; they’re busy with other sicker patients (some of whom are extremely old, maybe delusional and others who just give the nurses a hard time). JUST be prepared, drawstring PJ pants might have been better.

So those are the biggies, but there are so many more things I encourage…

Tell people what you want and be specific. Don’t just ask someone (nurse or otherwise) if they can do something that would be helpful to you, and don’t take no for an answer. If the initial answer is no, insist on an alternative solution to your problem, a compromise. If you don’t get anywhere with the nurse, politely ask to speak with the supervisor/head nurse. This is your show, and while it may sound ironic, YOU are the only one allowed to say, NO. And if something doesn’t feel right, say so.

Get your core strength up prior to surgery, you’ll need it.

Sleepover buddies are important. My first night I had a wonderful nurse who came in on a very regular basis, every time I needed her, and she was competent. She felt like my partner. I felt safe. The evening nurses Friday night, and even some of the nurse assistants in general, had less than stellar attitudes, or were just nervous to make decisions. You don’t need someone being less than confident or aggravating you. You need an advocate. If you have someone who’s willing to stay with you, take advantage. Just prepare them they might not get much sleep. You can repay them in treats that will flood your house upon returning home.

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When I blogged before my surgery, I was terrified. I wrote about how having a bilateral mastectomy resurrected this feeling of losing a part of myself, something I’d felt back when I was 16 and lost my hair because of chemo. I also wrote that all those years ago, when that gut-wrenching 5-minute experience with my mom shaving my head was over, I went back to my room, forced myself to look in the mirror, and was surprised… I looked good. I looked REALLY good. And the hardest part was over.

Last Thursday morning, as Dr. B wheeled me away from my parents, who could not hide their tears, and into the operating room, where I couldn’t hide my own, I grabbed my god-given, awesome boobs for the last time, looked at Dr. B, in her sweet, compassionate eyes, and I went to sleep.

In what felt like minutes, I was waking up. And the worst was truly over. Just like it was 17 years ago.

I expected to feel awful, 7 hours of surgery is LONG. I didn’t immediately feel so awful. The pain was very crazy, but I was coherent and drugged up. My mom and dad were on either side of me. I was cracking jokes, I couldn’t tell you what they were, but I know my parents, who love to act as if they’ve never heard or used a curse word in their lives, were half-laughing/half trying to pretend “she’s never like this it must be the anesthesia” (NOTE: I’m alwayslike that). I kept asking my mom if she’d called my cousin Lauren, who was in charge of kicking off a phone chain to tell my closest friends and family I was out of surgery and recovering. More truthfully, I was demanding she call Lauren. She finally listened to me, and told Lauren, “She’s up, and she’s already ordering people around.” #ShesBack

me and peg, just before surgery, Aug. 6, 2015me and MUR, just before surgery Aug. 6, 2015

When the nurses wheeled me into my room around 7 p.m., the first thing they did was check my vitals and my incisions. This meant they had to open up my gown and my surgical bra. I had no idea what to expect, but my spirits were up and I was feeling brave. The nurse said, you can look away if you want, and I said, “No fucking way.” (yes, I said the F-word). This was the moment of truth, how could I look away? Again, history repeated itself… the nurse said, “Just so you know… every nurse on this floor has boob envy.” And I understood why… my new boobies already look pretty fucking amazing. Holy cow. How do you spell relief…

More on the new boobs in a future post. Right now, most people are wondering, “So… how did you do?” Here’s how…

The first 12 hours post-surgery were quite possibly the most difficult of my life. I’m not really sure what “recovering remarkably” translates into, but I’m pretty sure I achieved it based on the reactions from the nursing staff, my doctors, my parents and my close friends. But for me, it also wasn’t like there was a choice. That’s how I’ve always been. Set a goal and shatter it. When you see a challenge, you tackle that shit… you move onto the next one, tackle that… wash, rinse, repeat. To me, this is just logical.

I only spent two nights in the hospital. I expected, and was told, I’d be there through the weekend. I left Saturday morning, as early as possible, and literally walked through the halls (politely) hounding the nurses to give me my discharge papers and remove my IV. I’m sure they loved that.

But that first night was so tough. My parents left and I was lucky enough to have my own room, but I was in excruciating pain, withdrawing from the enormous amount of anesthesia, I was catheterized and had a button to push any time the pain was unbearable. The medicine coming out of the pump (dilaudid/hydromorphone) was making me barf despite very effective anti-nausea medications (Zofran and compazine). My mouth constantly felt and tasted like sawdust, I could barely keep ice chips down, so the nurses wouldn’t give me any food to coat my stomach. I had to choose between pain management and constant barfing… isn’t this the picture of true glamour?

about 2 a.m. Aug. 7, 2015, dilaudid makin’ me grossie

I dealt with this for a few hours. I had removable oxygen tubes in both nostrils and compression cuffs on both legs to prevent blood clots. When you’re that uncomfortable, you just can’t sleep, and minutes start to feel like hours. I was antsy and my mind told me it was time to start moving, but my body wasn’t ready. It’s in those moments that you exercise mind over matter, like Uma in Kill Bill (wiggle your big toe). I knew the first big hurdle was walking, somewhere, anywhere. And at 430 a.m., I decided to try it.

I’d been avoiding the pain pump, so my pain was high, but my stomach was cooperating. My nurse gave me a shot of Zofran so that when I went upright I wouldn’t lose my cookies. My teeth started chattering and my body started shaking as if it was hypothermic, a sign of anesthesia withdrawal and your body’s reaction to intense, uncontrolled pain. The nurse had me swing my legs to the left edge of the bed and helped me sit up… I got that far, gravity immediately settled in, and so did the weight of the 7 hours of tearing apart my torso… and it sort of resembled this. The pain was so incredible it brought me to sobs. The nurse urged me to press the pain pump until it stopped beeping (it locks you out automatically before you overdose). The pain subsided fast, the sobs took a little longer. I was out of breath, but the nurse was proud and supportive. First hurdle overcome. It hurt like a bastard, but it took all of a minute.

Next I actually had to walk. A huge wave of nausea washed over me (I def pressed the pain pump about 17 times) and I didn’t think I could stand. The nurse, in a way that only a brilliant nurse can, encouraged me by saying, “If sitting is all you can do, it’s more than you were doing a minute ago. We don’t have to go very far. We can sit here, or we can just walk a step or two to the chair and sit in it. It’s up to you.” A good compromise to walking out of the room, down the hall and back seemed like walking across the room to the sink, since I’d probably need to barf in it anyway. I stood up slowly. I waited, breathed away the urge to hurl, slowly walked to the sink and sucked on a few ice chips. I said, “That’s it, I’m good, please bring me back to bed.” Two steps back and I hurled into a bucket that the nurse got to me just in time. When I stopped, I wiped my face, took a breath and said, “OK, let’s go down the hall.” And the nurses BEAMED. They promised me, it only gets easier, and much easier, from here.

I slept intermittently into Friday morning, laying down was stiffening my entire upper body, but the nurses were right — things started improving quickly. And that’s because I kept moving.

Friday

The nurses brought me a bland breakfast, I ate half of it sitting in a chair next to my bed. Since I was eating and drinking, the nurse took out my catheter. I told them to get me off of the pain pump, and that meant they could also remove the annoying oxygen tubes. I started a new pain management cocktail and the compression bands on my legs came off. This was all within about 5 hours. I was feeling human again.

My best high school friends Jackie and Laura showed up, and they helped me get up, walk to the bathroom, I brushed my teeth (and did again probably a million times more that day), Jackie washed my face, they brushed my hair and helped me put it up. My cousin Lauren showed up and helped me ditch my hospital gown (it just makes you feel like a sick, incapable person walking around with a gown your ass hangs out of, let’s be real). She helped me into my real clothes. I was LOOKING human again. I sat up in bed, stood and walked a lot. I started stretching my arms lightly. My friend Laura came back that night with our friend Lysa. Nobody who visited came empty-handed. Everyone brought something I really needed: magazines, slippers, roll on antiperspirant (very important when you can’t lift your arms or feel your skin well), healthy snacks, light, soft PJs that would be easy to put on, the list goes on. I don’t know what I’d do without these girls.

Friday night, Duane stayed with me in the hospital. The poor guy barely slept and was so nervous I might break. He also brought me all kinds of things I’d forgotten that I really needed, helped me in and out of my bed, in the bathroom, with my hair, arranged pillows, carried things, drove me home to my parent’s house Saturday morning, ran to stores to buy stuff I realized I’d need, zip-front sport bras included (yes… for me, he was the creepy guy at Sport’s Authority way too early in the morning looking at bras).

The bottom line is, I did fabulously those first two days, and I never expected to. I owe this to the people who love me that showed up and helped me, physically and digitally. I had wifi the entire time (talk about something incredible to pass the hours I was awake). My social media notifications were in the several hundreds, as were my text messages. A lot of people couldn’t believe I was up and so active, so responsive. Many said I was an inspiration… you know what? The love inspired ME and distracted me from focusing on my pain. Love makes the world go round, and when you have a team of thousands routing for you, anything is possible. Saying I’m grateful does no justice to how I really feel to each and every one of you.

My parting words on this part of the adventure are, when you give love you get love. We can waste time worrying and contemplating and obsessing and jumping from one foot to the other, or we can set our minds to a desired outcome, say it out loud to the world with love and commitment, and be open to the possibility that things may not go as badly as we suspect. You MAY just be surprised.

Just like anything else in life, INCHES MAKE CHAMPIONS. Small steps turn into several steps. The time is going to pass anyway, you may as well be productive and working towards your goal, in my case, nearly perfect health of mind, body and spirit. And I wish all of that for you too ❤

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If you’re reading this, it means I made it and am clicking the morphine button like mad, possibly barfing my brains out and can’t really move, let alone type. I’m gonna be golden in a day or two (or five) and my best friend Christine is posting this for me.

Even if I haven’t had a chance to respond, I’ve seen and read every call, text, email and comment. You’ve surprised me, helped me and lifted me up. “Love actually IS all around.” I couldn’t be more blessed.

I’ll be recovering on Long Island for the foreseeable future. Until next time…

[OUTAKES FROM ALL OF MY GOLDEN GIRLS — THEY ARE THE REASON I I LIVE]

Be like Freddie Mercury opening night in Montreal

Be like Bret Michaels on the Rock of Love bus

Be like 50 Cent without his bulletproof vest

Go in there like when T-Rex was the king of the dinosaurs

Go in there like when BIG was the king of rap

Go in there like when Billy Joel when he made Uptown Girl

Go in there like when Julia Roberts went back to Rodeo drive after those bitches dissed her (#winner)

Go in there like Jeremy Lin on the Knicks in 2012

Be like Enimem at the end of 8 mile

Go in there like Matt Damon in Good Will Hunting when he “got her numba… how do you like them apples” (those pretentious, preppy Harvard punks)

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The roller coaster of emotions I’ve been on since June 1 is evident by the way my house looks right now (like a tornado came through), the piles of lists in every room, the started and unfinished “projects” and the amount of Xanax I’ve consumed. I have never freaked so much in my life. It almost feels manic, and that alone freaks me out. I’m normally very level-headed and precise, but I’m aware of coming unglued. It’s so weird.

I always bite off more than I can chew, and when I scheduled my surgery for Aug. 6, I knew there were specific things I needed to accomplish beforehand: make a reconstruction decision (top priority), get to Maine with my family (we’ve gone almost every summer since I was born) and get to LA to visit my brother and his family, to hug my beloved nephew Arrow and his new little sister Rio. Somehow, over the last two months, I did so much more than those three things. I’m proud that I did. I’m kind of shocked I did it, I have no idea HOW I did. But now, and as of Aug. 1, the lists have been checked off… and there’s been nothing left to do but wait.

And think.

And worry.

And wonder.

And now surgery is here, and I cannot help but feel slightly terrified.

In early June, I woke up from a dream where I’d had my mastectomy, and I felt it… this hollow, empty, numbness where my breasts had been. This concavity, almost like my heart was gone too. No aching, no feeling at all. Just nothing. And I sobbed the whole day. What the hell is this going to feel like? The unknown is so scary.

I mentioned in my previous post that many women have been kind enough to sit with me, to lift their shirts, to let me REALLY look at their reconstruction, to feel them. Many of them said, very casually, “Sure go ahead, I don’t feel it anyway.” One woman actually said, “I’ll show anyone because I really don’t feel like their mine.” That comment in particular struck a chord. I would hate to think that after all of the work I’ve done to make the right reconstruction decision, they wouldn’t be “mine,” even if they feel like nothing.

No matter how tough you are when dealing with cancer, and overcoming it, there’s something very personal about what cancer robs you of. When I was a child, I had a head of long, blonde curls, from age 3. Goldilocks. Hair everyone talked about and wished they had.

little Mary at my Auntie Di’s house, circa 1988 (age 6)

And when I had chemo, I had to watch it fall out slowly, as if in order to be cured, something has to die. When I couldn’t bear to watch it anymore, I asked my brother, a metal head, to shave my head… he couldn’t bring himself to do it. And so my poor mother had to. I put my head down over the sink and just sobbed. And it’s just hair, it grows back. To be honest, I loved being bald. When I was finally able to look at myself in the mirror, I felt relief. I never wore a wig and rocked a great shaved head. But in that moment, those few minutes with my mom and the buzzer, cancer won. Cancer stripped me of part of my physical identity. I think that moment was worse than the 9 weeks of chemo I had. Because it was heartbreaking.

And now as I sit here, and think about what it’s going to feel like to not have any feeling at all in my upper torso, I’m furious and devastated. I have no doubts my new boobs will look great. I’m sure I’ll love that they’ll never fall like my real boobs have already started to. They will look like mine. But that’s not what this is about… they won’t feel like anything. They won’t get in my way like they always do, I won’t notice them when I’m walking up stairs. I remember what my skin felt like after my biopsy as a teenager, and what my neck felt like after my thyroid was removed. It’s like when you go to the dentist and they shoot novacaine into your mouth and you play with your lips for hours afterward. Except that feeling never goes away.

I’ve been strong and positive up until this point, and I still am. I’m confident the surgery will go well. I’m blessed with thousands of friends, and friends of friends, who have come out of the woodwork to wish me well, pray for me and think of me surrounded in white light. I’m going to be just fine and I’m eternally grateful. But I think I deserve my moment to mourn my body. Like any other unknown, this one is terrifying.

We spend so much time focusing on our physical flaws and striving for perfection. You really don’t know what you have until it’s gone. Cancer taught me that a long time ago. Let this lesson be to love and honor yourself. Take care of the body you were given. Stop being your own worst critic. Stop criticizing and judging others’ appearances when you have no idea what they are struggling with. There are men and women who have lost limbs or who’ve become disfigured due to illness, accidents and combat. You should be so lucky you aren’t one of them.

This will be my last post before surgery. THANK you for thinking of me, for reading my thoughts, for sharing them with others, for sharing your own with me. I’ve had my moments of weakness. This has been a big one I’ve carried for the last two months. I’m ready to let it go and focus on being brave (sing it Sara…)

See you on the other side of surgery ❤

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Big holla back to the creators and supporters of the pink ribbon movement. I work in public relations, so I geek out when something so simple raises international awareness. At the same time, as a cancer survivor, a woman and someone who’s spent her entire career in the healthcare/pharmaceutical industry (including breast cancer causes), I can’t help but feel shocked, and sort of naive, to learn how COMPLICATED having a double mastectomy is. Angelina Jolie failed to mention that part in her NY Times stories.

Encouraging women to be strong, run out and chop their tits off is empowering and brave, but it only scratches the surface… it does nothing to prepare women for what that entails. When you learn how crazy reconstruction is, the mastectomy almost seems like the easy part. Further, the success of your reconstruction depends a great deal on the talent of the breast surgeon doing the mastectomy. A plastic surgeon does the reconstruction. You literally have to find a dream team.

I’ll start by saying, once again, I’m grateful my diagnosis is DCIS and not something more progressed requiring additional treatment. This diagnosis has given me the gift of CHOICES. Breast cancer patients, particularly those with zero body fat or who need chemo and radiation, have more limited choices. But, choices are a double-edged sword. All of them are hardcore, long procedures and in my opinion, none of them are great… likely the reason some women opt to forgo reconstruction altogether. “Great” would be never having to lose your own breasts. I’ve been blessed with a pretty awesome pair of large, natural boobs. They’re so nice, they’re a conversation piece, and have been for decades… HILARIOUS conversations, obviously. My friends and family will 100 percent attest to this. Go figure I have to lose them, but I won’t digress further. In short, I will (already am) mourn the loss of my boobs and my doctor has big shoes (boobs?) to fill.

My best friend and old roommate Seana made these shirts for our other BF/roommate Jen when she was battling Stage 3 invasive breast cancer… being put to good use again (July 6, 2015)

I’m lucky I’m a candidate for a nipple and skin sparing mastectomy. This is important to me. I’ve met other women who didn’t have that luxury, or who didn’t care about that luxury. Call me crazy, but I’d like to keep what’s mine, if it’s safe to. I’ve had plenty of procedures that have left me with scars all over my body. Sure, scars are cool… they’re about as cool as having cancer. I think if most had the option to NOT have a huge scar on their body, or not have a part of it amputated, they’d take it.

Once I was diagnosed and started telling close friends, I was immediately connected with women who’ve had reconstruction. They told me about their experiences. They lifted their shirts for me and let me feel their boobs. Some of them had reconstructed or tattooed nipples and they looked amazing. The doctor can use skin from your thigh to create a nipple, and I think there are about FIVE people in the entire US who tattoo nipples well. Women travel hundreds, even thousands of miles to have it done. That’s a lot of work, and we haven’t even gotten to the actual boob yet…

The treatment you are having, or in my case, HAD, also impacts your decision. Radiation damages the skin and how your reconstruction heals. You can develop complications, infections, capsular contracture (scarring) and that can cause implants to look and feel like two tin cans in your chest. Those 14 days of radiation that caused my breast cancer could potentially impact how I heal from the mastectomy and reconstruction. I don’t know what Angelina Jolie or Christina Applegate chose, but for me and many others, it’s not at all as simple as removing my breasts and throwing in some implants, because if your skin is unhealthy, your body can reject the foreign object. You have to use body tissue to reconstruct completely, or to surround implants to protect them… and this is where things get interesting.

I took the entire month of July off from work to research reconstruction and met with several plastic surgeons, and I’m glad I did. The science behind reconstruction is FASCINATING.

I decided I want to look as close to “me” as possible. There are more options out there, but given my history of radiation, I was recommended the following options to be conducted IMMEDIATELY FOLLOWING my mastectomy:

DIEP Flap — This approach uses lower abdominal fat tissue, no muscle, to reconstruct your breasts. The doctor must perform micro-surgery to remove the arteries in the groin area which feed the fat tissue. Then, the arteries are reconnected back into the chest, so that they can continue to supply fresh blood to the fat tissue that is being used to reconstruct. AMAZING. The result is a very natural look and feel, lower risk of infection, and a “free” tummy tuck (yes, there are a few silver linings to having breast cancer). The cons: 8-10 hours (or more) of total surgery. Hugely invasive and highly complex (your doctor must be a PRO and the hospital staff must have an infrastructure to manage your recovery, not everyone DOES this). At least 8 weeks recovery with lots of drains. If you’ve never had children, you must consider that if you do in the future, your skin is now already stretched significantly. You need to have enough fat tissue for DIEP to even be an option. Depending on where your arteries are in your groin/belly, they may need to take some muscle, which means they replace it with mesh and you now have a risk for future hernias. And, you need physical therapy afterward.

Latissimus Dorsi Flap — This approach uses your back muscles to either reconstruct completely or wrap around an implant to protect it. In a nutshell, the surgeon cuts through your back muscle and wraps it around the front to your chest, along with any back fat you might have. I’m told this is the way to preserve the size and most natural feel. The cons: also an 8-10+ hour total surgery with lots of drains, intense physical therapy and what I have to imagine, and have been told by other patients, is a permanent impact on your future mobility (the back muscle used is what you use to twist your body). The result may look good, and I’m sure may patients do very well, but I have not spoken with any who have said they feel as mobile as they once did, even five years later. They DID say they spent two years sleeping like a mummy and unable to go to the gym — TWO YEARS.

So… WTF do you choose? I obviously said, give me a tummy tuck stat. Here’s the funniest part… my plastic surgeon discouraged me from the DIEP, because — get ready for it — I’M NOT FAT ENOUGH. I’m carrying around an extra person these days, thanks to my thryoid having been removed, but I don’t have enough fat tissue in my belly to construct breasts at my current size, which also means the likelihood of being able to save my skin and nipples would be low. They cannot take fat from multiple areas and no, they do not take donors (everyone I know has asked, you know you are thinking it…).

To give some context, I met with my plastic surgeon for the first time on June 5, still in shock that I even have to go through this. He was the first plastic I’d met with. I was in his office for FOUR HOURS. I walked out with Peg (my mom), she looked at me with excitement and said, “Isn’t he great?” I looked at her and burst into tears. Holy overwhelming situation, batman. What do I do now?

after work on June 16, still trying to wrap my brain around this and battling major anxiety.

I decided then and there, I would not be convinced until I’d spoken with as many GOOD plastics as possible, and I started doing my research. I had plenty of recommendations from colleagues and friends, and I got to work researching who the top docs performing the DIEP and LAT flaps were, NOT plastics who primarily do cosmetic breast augmentation. I checked to see who had been featured in credible medical journals, credible news sources (US News & World Report, TIME, NY Magazine, and medical magazines). I stayed OFF of the Internet and didn’t troll random sites. I spoke with patients. Everyone — patients and doctors — had a different story, a different perspective and a different recommendation. This was helpful, it gave me ammunition and new questions to ask MY plastic, but it didn’t help me make my decision. And I was STRESSED.

I went back to my plastic on July 7, a full month later. I told him I was unconvinced the LAT flap was the right decision for me, that the thought of a permanent impact on my mobility was terrifying and begged him to prove to me why I should reconsider. He admitted, he couldn’t convince me… he understood my concerns… and gave me a third option… just go straight to implant… a whole month later… WHAAAA?

Then my interrogation started: What about his concern about my radiated skin? What about the implants hardening? Why was I only hearing this now? His answers were simple and made sense: “Mary, you have the BEST breast surgeon out there. I would not be recommending this if you were having your mastectomy by any other surgeon, I’d be telling you the LAT is your best option. I’m confident your breast surgeon, Dr. B, will make sure the skin envelope is pristinely managed so that you don’t reject a foreign object. You haven’t had radiation for weeks and weeks like other breast cancer patients, whose skin LOOKS radiated, burned, scarred and thin. Yours was only 14 days, 17 years ago… you will be fine and I’m confident this is the best option.”

And, I was skeptical, but believed him…

A week later I saw a brilliant plastic at NYU for an opinion, someone a good friend recommended (she’d done her breast reduction). She asked me what I’d been recommended. She IMMEDIATELY told me, straight to implant is what she’d do, and why the DIEP and LAT procedures were not optimal, for ME. Her reasons validated everything I’d felt, and had been told by my plastic. She ALSO said, there was only ONE breast surgeon in all of NYU that she’d recommend do the mastectomy, to ensure the least risk of complications. She also said she’d treated many patients just like me, who’d gotten breast cancer as a result of chest radiation due to Hodgkin’s Disease, and they’d done very well. She also said she knew and had studied with my plastic surgeon. And all of a sudden, I had peace of mind.

So that’s the decision that took an entire month to make: bilateral mastectomy and at the same time, my plastic will insert tissue expanders under my pec muscles. I will wake up with smaller “boobs” and go home with about four drains. I go back and forth to the doctor for the next 6-8 weeks and during that time, they inflate the expanders to the size I want to be. In about 3 months, I go back in for a quick in/out surgery where the plastic goes back in through the same incision, removes the expanders, and any scar tissue, and inserts the implants, which are wrapped in Alloderm (cadaver skin) to protect them from rejection. Yikes. This is happening.

The lesson from this long ass post: if you have a complicated and serious medical condition to deal with, DO YOUR RESEARCH. Don’t settle for a decision your gut tells you isn’t 100%. Ask questions, poke holes, and demand to know “what if.” When it comes to getting second opinions, do what you have to in order to get the appointments, LIE if you have to. I cannot tell you how many doctors would NOT see me because I’d already scheduled a surgery. Memorial Sloan Kettering would not return my calls. In fact, the admins I spoke with asked ME to call back daily, because they don’t meet patients for second opinions… “they don’t have time for that.” I’m sorry, but I didn’t realize meeting with a doctor at such a prestigious institution in NYC when you have breast cancer was the same as trying to get a resi at Del Posto for dinner. Shocking, but then again, everything happens for a reason.

Again, a lot to absorb. My surgery is Aug. 6. I’m mentally preparing (slowly starting to freak out). I’ll post once more before I go in. Much love.

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A lot of big things happened for me in June, but the most significant was ironic… June marked my 17th year in remission for Hodgkin’s Disease. This past June I received my second cancer diagnosis: ductal carcinoma in situ (DCIS) in my left breast. Stage 0, non-life threatening and non-invasive breast cancer, found because I’ve had mammograms/MRIs annually since age 24. To prevent recurrence, I will have a bilateral mastectomy on August 6. Reconstruction will begin at the same time.

Holy shit. Buckle up.

driving to the Jersey Shore at 8 a.m. on May 23, 2015… still blissfully unaware I even have breast cancer.

Like I was told so many years ago, my breast surgeon said, “You are lucky. Your cancer was caught early. You will be cured. But, your road ahead will be tough.” Dealing with chemo and radiation in high school WAS tough. I’m relieved I don’t need it again , but a bilateral mastectomy with reconstruction starting in August is a whole different kind of tough.

I’m aware that not everyone knows my story from the beginning, and that has everything to do with the present, so like any story, I’ll start from the beginning… get a beverage of your choice, this post will be the longest one.

I have no family history of cancer. I was diagnosed just days before my 16th birthday with stage 1A Hodgkin’s Disease. I’ll never forget the moment the oncologist said, you have Hodgkin’s Disease, and the sound of my mother’s breathing as we processed that… I had no idea what the doctor was talking about, I had no idea he was even an oncologist, until I heard the words “chemotherapy and radiation.” Then I understood everything. And I was mad. I was so mad. The doctor was talking, but I heard nothing. Then he looked me in the eye and said, “This is going to be a tough 6 months, but after it’s over, you’re going to be cured.” And I thought, well, my sweet 16 is in two days. At least I can party like a rockstar, in a beautiful dress, with my closest friends and family, before all of my hair falls out and I spend the next several months barfing. The thoughts of a teenager…

After one surgery, a bone marrow biopsy, dozens of scans, 3 cycles of chemo, 14 days of radiation and one last surgery to remove my mediport, I WAS cured, for all intents and purposes… but by no means was I done with cancer.

Those 6 months WERE tough. Chemotherapy is disgusting, and not just because you feel nauseous and lose your hair. You lose your taste buds. You’re on a ton of daily medications to prevent infections. You’re given steroids which bloat you and keep you up all night. Your face becomes round and your eyes get dark. You are tired. You have to give yourself daily shots to boost your white blood cells to fight infections. Those shots make your joints weak and your knees give out (your bone marrow is tired from overproducing). Chemo stops your hormones, so my body went into early menopause and I had hot flashes day and night. You can’t be around germy things. If you develop a fever of 100, you have to go to the hospital. Luckily I was never admitted, I came close once.

I was optimistic through the entire experience. I was being treated in the pediatric ward at LIJ, surrounded by children and babies who were much sicker than I was. Some would never leave the hospital. Some would never reach their 16th birthdays. I had so much to be grateful for, and still do. I would be cured. And I never forgot that. Over the years, people have told me how strong I am. My response is, how can you be anything less when you see children, who only know the inside of a hospital and still manage to laugh, smile, play, hug their parents, share their toys and be brave through all the needles, and overnights, and pain. You learn to be strong right away.

I saw the bright side of chemo. No hormones means no monthly period. FLAWLESS skin on what used to be a broken out adolescent face. No hair anywhere, I loved not having to shave my legs. And a shrinking tumor with each cycle. My treatments were working. They were also creating long-term risks I would have to stay on top of for the rest of my life.

In the last 17 years I’ve had countless chest x-rays, blood tests, cat scans, pet scans, gallium scans, EKGs, echo cardiograms, stress tests, ultrasounds and mammograms/breast MRIs. I’ve had more health scares than I can count. I’ve spent thousands of hours convincing health insurance companies to cover these tests, as if they’re elective. I’ve spent even more time navigating what it’s like to be treated as an adult, no longer a pediatric patient. I learned that sadly, most healthcare administrators don’t care enough to go beyond their most basic duties. Medical records gets lost, messages get lost, doctors forget to call you back, they forget to remind you to come for your annuals. You fall through the cracks of our unfortunate healthcare system, as if you have time to make sure healthcare professionals are doing their jobs. You have to be your own advocate, you have to raise your voice, you have to be assertive, direct and sometimes rude. Thank goodness LIJ enrolled me in their survivorship program once my 10-year remission visit was completed. They handed me a roadmap to ensure I stay healthy and this has been invaluable. They still keep in touch.

In 2009 I had a private reading with a medium who pointed to the spot on my left breast where the DCIS was just found. She told me, there’s a lump there. I told her I’d just had my mammo/MRI and all was clean. She said, if you don’t have it now, you will. It’s going to be fine, cancer isn’t taking you down, just be prepared.

In 2011 an ultrasound of my thyroid showed a tiny nodule that my endocrinologist insisted on biopsying, given my history. This came back atypical and without question, the recommendation was to remove the entire thyroid. It was already barely functioning and if there was one nodule, there would be more in my future. First broken body part removed…

In 2012 when I went for my mammo/MRI, the radiologist said he wanted to do a quick ultrasound. I couldn’t believe my ears, even though the medium had prepared me years prior. They focused on the spot in my left breast where she had pointed to, but said nothing to me. When I started asking questions about how big it was, the radiologist looked at me, shocked, and asked if I felt anything, did I have any pain. I just said no, you wouldn’t believe me if I told you. He said, I can only describe what I we see as a cluster of cells. We’re not sure what it is, you are young, your breast tissue is dense. It’s something we should monitor, come back in 6 months. After two more MRIs, and no more changes, I was told to resume my annuals.

This past March I had my mammo/MRI. About a week later I received a notice from my post office that someone (recipient not disclosed) was trying to send me a certified letter… could have been from anyone. I work M-F, 9-5 and am never home to accept a certified letter. Those are also the post office’s hours. When would I ever be able to get this letter? And why should I make it a priority? I had no urgency to do so since I didn’t know who was sending it. I never received one phone call from a doctor, why would I have any reason to believe it was from mine?

Almost a month later, on a Saturday before a business trip to Las Vegas, I made it to the post office before noon. I was handed one envelope, with two letters in it. The first read, your mammo came back fine, please come back next year. The second letter read, your MRI was abnormal, please follow up with your doctor ASAP. HUH? Did the person stuffing the envelopes even read them? Did the person typing the generic shitty template put two and two together? DID ANYONE TRY TO CALL ME? The next business day, from my hotel in Vegas, I spent several hours trying to connect the dots. What were my next steps? What does “abnormal” mean? Why hadn’t the radiologist just done an ultrasound like he had in the past on the same day I’d had my MRI? I spoke with the OBGYN who had ordered the MRI, and the radiologist office who performed it. Nobody could give me a straight answer, nobody would take responsibility for never having called me, nobody could tell me how I’d fallen so far through their cracks, but after two hours, they finally confirmed, you actually don’t just need an ultrasound, you need a biopsy. The cells grew.

I had an MRI-guided biopsy on May 1. A few days later, my (incompetent) OBGYN called with the results. She was a day early, so I knew it wasn’t good news. In her bubbly, amateur voice, she said, “I have GREAT news and some not so great news. The GREAT news is, you don’t have breast cancer, so that should be a relief… BUT, you have atypical cells, so you really should follow up with a breast specialist, I can recommend someone in the area for you.”

No thanks doc, I’ve got this.

I called my mom. I made an appointment with a breast surgeon on Long Island to appease her, and another closer to where I live upstate. In my mind, I trusted what the medium had said. This was not the end of the world, I was going to be just fine, but what I had to deal with was just an inconvenience. I had already decided to have a lumpectomy. I didn’t want atypical cells turning into something worse.

My appointment with the LI breast surgeon, Dr. B, was June 1. Weeks prior I had requested to have my medical records sent to her in advance, and the radiologist’s office sent them to the wrong office. More frustration, more waiting… I finally went into the exam room and Dr. B asked what brought me to her. I told her a biopsy had shown atypical cells. After a few minutes, she asked me to dress and meet her in her office where we could talk. In there, she told me, “I don’t know who told you you have atypia, that was wrong information. This is more serious. You have DCIS, it is early stage breast cancer that requires treatment, and there are a few options we need to discuss…”

And all of a sudden, I was right back in that moment. I heard my mom’s breathing. She grabbed my hand. I completely lost my shit. Except this time, I heard every word the doctor said, because when you’ve been where I’ve been, and know what I know about the healthcare system, you pay attention.

A lumpectomy was an option, but only if followed by radiation, which is what landed me here in the first place. Another alternative was to follow a lumpectomy with 5-10 years of tamoxifen, a good drug, but one that would mean no children (you cannot be pregnant on tamoxifen). At 33-years-old, that is not an option for me.

This is just the tip of the iceburg. There is much more to tell, but this was a lot… process it. I’ve learned a lot of lessons, some of which you may have picked up from this first post, but more that I will share as this ride continues. When all else fails, you know what? You just gotta be tough. #BOOM